A New Year. Leo's 2013 Wrap-Up!

November and December were absolutely the busiest months of 2013... weren't they?  Now that we're in agreement, it's time for Leo's 2013 Wrap-Up!

Backtracking just a little, Leo finished out October 2013 with a round of pneumonia.  This was pneumonia round 4 for him. It made mom feel like a bit of an expert on the symptoms and luckily it was caught early. After a full month of antibiotics, it was time for another big surgery (number 2).

On November 20th, Leo had a combo surgery (two different procedures). First, surgery to remove lingual tonsils (his palliative tonsils were removed at age 9 months), clear out any regrowth of adenoids (there was none, yahoo!), and a deep cleaning of his ear canals for tubes to function well. The second procedure was bilateral eye muscle surgery to correct exotropia. Due to his low muscle tone, Leo's eye muscles were not strong enough to focus properly. Surgery to correct this will keep him from losing function of his eyes and losing actual eyesight. Both procedures were a big success, both immediately and on follow-up. The lingual tonsil removal was supposed to be an easier recovery than his first tonsillectomy, or at least it is for most. Being the usual "exception" that he is, it was just as difficult for Leo the second time around. He refused food, even strictly pureed or ice cream, for a full 15 days!  He lost more than 10 percent of his body weight and looked pitiful. He also developed a respiratory infection right after surgery that led to the return of pneumonia (pneumonia round 5). Also in typical Leo fashion, he regained everything nicely and then some, and recovered well. 

Another highlight of November was the Thanksgiving celebration with families of those kids featured in the Down Syndrome Guild 2014 Calendar, hosted by Elvis Andrus of the Texas Rangers baseball team. We were extremely privileged to be a part of this special event! Let me just say what a caring, loving, and selfless person Elvis Andrus is.  He spoke about how he spent time giving and sharing with families of children with disabilities in his home country (Venezuela), and he wants to do the same for families here because he holds a special place in his heart for children with disabilities.  Over the summer, he gave of his time for a photo shoot for the DSG calendar and connected with the little lady that he posed with.  Because of that, he wanted to give more to the Down Syndrome Guild.  Not only did he put on a beautiful, catered event for our families, he also gave us a spectacular gift basket and our Thanksgiving turkey.  Without hesitation, I canceled my order with Tom Thumb (take note that Leo was less than a week post-op at this point!), and we savored our very first Kuby's smoked turkey.  I'm now completely spoiled, because it was one of the best turkeys I've ever had! 

Elvis donated $10,000 of his own money to the Guild.  How cool is that??

Another special part of the evening was the amount of time Elvis took to pose for photos and give autographs.  We, and especially our children, had his undivided attention for an evening. I loved seeing him carry on conversations with extreme patience, smile genuinely and hug freely. He impressed me. 

Leo was a Superstar on the news in Dallas that evening! 

Leo was only five days post-op for this event.  We made sure he had plenty of pain meds on board before going.  As you can see in his eyes, he was not himself. His eyes were still red from surgery and he just looked like he wasn't feeling well. He was such a little trooper, but the evening definitely had it's toll on him. By the time we left, he cried all the way home!  It was one hour and 15 minutes in traffic with a non-stop crying boy. Pitiful... but a memorable time. We are just glad he won't remember being in pain!


December was filled with Christmas parties, Santa, a trip to see Ice at the Gaylord, and fun times with family. We had a LOT of family time (as our teenager will testify!) over "Christmas Break".

On Christmas day, Leo even opened a few gifts on his own this year. He still had the attention span of a one year old though. Ha!  He really enjoyed having a lot of time to play with brother Seth over the break.

Don't let this picture below fool you... he did NOT enjoy the cold air at the Ice exhibit....

... and Santa was also questionable, but tolerable!

2013 went out with a bang when we celebrated Grandma Elsie's 100th birthday!  After ringing in the New Year at the Hampton Inn and Suites in Kerrville, Leo had a blast at her birthday party on New Year's Day.

  

We were blessed beyond measure this past year. Looking forward to a fresh start that brings new adventures. I hope you will continue to follow Leo on his journey, as we share the story of how he blesses our lives every day.

Happy 2014!

with love,

Joyce

other kids with special needs

Last month, Chris and I had the opportunity to "take a break" and let the boys spend an evening at the Saturday Night Alive respite program at our church (FUMC Rockwall). It was great to know there were folks volunteering to take care of children with special needs and provide a fun time for them and their siblings so the parents could have a little time off. But even better than taking a break, this past Friday night I had the privilege of being one of those volunteers. 

Friday night, I spent three hours with five very special tweens and teens with special needs. I've been wanting to volunteer for quite a while, mostly for my own selfish reasons.  As I've said before, I often forget Leo has a disability.  Since he's a baby, or actually a toddler now, I don't think we don't get the full picture of what to expect in his future yet. I've been curious to know what it is like to spend time with older children or teens with special needs?  

I was a little surprised by what I learned. About the kids, and about myself.

It hurts the heart when children with special needs cannot communicate their needs to you.  

There was one child in particular who could not communicate his needs. He was very happy when he arrived, but after spending some time around noisy toys and seeing it begin to rain outside, he became very sad. Sad to the point of tears and it broke my heart. We spent lots of time consoling him, and I had the chance to take him for a walk. Once we were in a quieter hallway outside the classroom he was much calmer. Was there too much stimulation?  Was he afraid of the rain, that he could see outside the window? I couldn't help but wonder exactly what he felt not being able to directly communicate his needs? It really hurt my heart.  He finished the evening in a smaller, quieter classroom downstairs and all ended well.

There is immense joy from seeing a child with special needs accomplish something. 

Even though this was my first night to volunteer, there were other volunteers who have spent time with these same children through both the respite program and through the community as well.  One of the volunteers I was working with is a teacher at Head Start in Rockwall ISD. She joyfully shared stories with me of how far some of these kids have come along over the years - physically, verbally, and from a maturity standpoint. Stories from a child who was wheelchair bound all his life transitioned to orthotics and walking on his own, to another who went from totally non-verbal to communicating in phrases. Hearing her stories made me wish I had been a part sooner and witnessed the accomplishments!  Which brings me to the next thing I learned...

The teachers and support staff who work with children who have special needs do it because they love what they do, and they love the children.  

As I already mentioned, I was paired with a teacher from the Head Start program. I also met another volunteer who works at the High School teaching teenagers with special needs, as well as another staff member from one of the local Elementary Schools who does the same.  Why on earth would individuals who work such a challenging and exhausting job all week long want to volunteer at yet another program doing the same challenging and exhausting work? For Free? It's simple. They love what they do, and they love these kids. It really makes me happy and at ease to know I have teachers like this in our district to look forward to working with Leo!

My least favorite thing that I learned... Spending time with older children who have special needs made me more aware of their vulnerability.

I have wanted to believe that Leo will grow up in the same world that Meris and Seth will grow up in. After all, we will give him all of the same opportunities as our other children.  We will have the same expectations of him. But Friday night really brought to my attention the one difference Leo will have going against him - he will be more vulnerable to the world. If he is not surrounded by those who look out for his best interest, if he is not watched over by those who completely love him, he could very easily be taken advantage of. Materially, financially, or worst of all physically.  This scares me to death.  This is an area where I have to pray to God a lot, and trust that He will protect Leo any moment that I am not there to do so. It's because of this realization that I say I was "privileged" to work with these special kids.  Their parents, with the same fears I have, entrusted the safety and well being of their precious children to me. That is a privilege!

I learned that I loved working with these children. 

They each taught me more than I expected, and I loved spending time with them more than I ever thought I would.  

At the end of the night Friday, I was pretty tired.  I looked forward to crawling into bed a little early, expecting Leo to crash since he was up past his bedtime. That didn't happen. Instead, Leo's teeth that are trying to pop through had no mercy. The teething erupted with a vengeance, leaving him screaming inconsolably for nearly two hours. I went from really tired to super exhausted!  At first I thought - why now?  I just gave three hours of my life to help other families take a break... and this is my payback?  Then it dawned on me that this is the life. Now I know "teething" has nothing to do with special needs... but seriously, the moment made me realize in the life as a parent of a child with special needs, there is never a break. 

So with that thought, I highly encourage you to consider volunteering with a respite program.  There is such a need for this in all communities and they cannot continue to run without volunteers.  Being a parent to a child (or in many cases children) with special needs is a very, very hard job.  Parents need to know they have a break coming.  A moment to take a deep breath and be relieved of their responsibilities. Time to reconnect with their spouse, or just time to relax. In the case of one family, time to go to the grocery store!  Spending time with these children is eye-opening, yet so rewarding. 

You won't regret it.

With love,

Joyce & Leo